Family sees past loss to gratitude

Mother’s new book chronicles her son’s coping with a rare genetic disease of the nervous system. Despite their grief, the family refuses to see the glass as half-empty.

December 05, 2009|By Brianna Bailey

Christina Levasheff knew there was something terribly wrong when her 2-year-old son Judson fell down for no reason at the park in front of her Costa Mesa home on day in the spring of 2007.

“There was nothing to trip him. I remember thinking ‘there’s something off; something is not quite right here,” she said.

That spring day in the park was the beginning of Judson’s five-month battle with a debilitating genetic disease that would eventually rob him of his ability to see, walk, talk, and even breathe.

Christina Levasheff’s new book, “Eyes that See: Judson’s Story of Hope in Suffering,” chronicles her and her husband Drake Levasheff’s journey as they watched their son grow sicker each day.

Advertisement

The book of the Levasheffs’ personal letter and journal entries chronicling their son’s illness is available on limited release and will be in bookstores everywhere in spring 2010.

Judson’s health deteriorated quickly after his fall in the park.

One day, Judson overreached for his daily vitamin-C tablet that his mother had set out for him on the table — the toddler was having trouble seeing.

Christina and Drake Levasheff took their son to doctor after doctor — all were at a loss as to what was wrong.

Judson’s condition continued to worsen. Their son was irritable. His balance was off, his eyesight slowly fading.

Finally, after weeks of misdiagnoses, doctors determined Judson had Krabbe disease, a fatal genetic disorder that attacks the nervous system.

Both Christina and Drake Levasheff carry the recessive gene mutations that cause Krabbe.

Most children with Krabbe disease die in infancy. The late-onset form of the disease that affected Judson is found in only one in every few million births.

It was only a matter months before their active, articulate son who loved cars and could sing “The Star-Spangled Banner” had lost the ability to walk and was completely blind.

“We couldn’t imagine him being able to live life like that for very long,” Christina Levasheff said.

Five months after his parents first started noticing Judson was a little unsteady on his feet, he died at home, in his mother’s arms. Judson was just a month and a half shy of his third birthday when vital functions of his body gave out, including the ability to breathe.